More Walking

How better to start the new year than trying out some more walkers.
I think this is walker variation #4.

And it's a forward one. A front walker has been suggested a couple of times, but I was always hesitant because I heard that it was easier to use than the reverse one. And also that it promotes him sticking his bum out instead of standing up straight.

But I was told (and finally convinced) that yes it is easier, but Nick cheats when he is in the reverse one (he likes to rest his bum against the back and not work as hard. And he can't do this.

Also his posture is good and we aren't worried about him sticking his bum out too much. As well, we wanted to get away from the big forearm supports. Because this also lets him cheat but taking weight in his arms instead of using his core.

At first Nick was very hesitant. He was unsure and afraid and just didn't want anything to do with it.
That's fine, so we went on with some new stuff.
Of course he had to walk the whole way without the walker (just with our hands).

We went up these stairs, to a slide (this has 3 sides - low stairs, regular stairs and in the middle a slide). We had Katheryn with us - Kyle and I both went - and she had a great time going down that slide!

For some reason neither of us thought about taking pictures of Nick going UP the stairs. But he wanted the hold the handles (they were a little far apart for him) and step, step, step. Sometimes he'd get ahead of himself. But we were always there.

One time after the slide (when I was out of the room of course) Nick crawled right up to the walker and wanted to walk in it. OK!
I think he likes this one more than the other one.

Of course enough to clown around in it!
 

And of course I'll leave the best news for last (I have difficulty believing it to begin with).

Kim told us that she thinks that Nick will be a walker, but that she thinks that he will eventually be able to walk without any supports, just his AFO's!

YAY!!!

Nick has done so much in the last 6 months I can't believe it! So I don't think that I showed appropriate enthusiasm, but I'm still not wanting to get my hopes up by anticipating what he can do. I want to wait to see what he will show me he wants to do!

But I anticipate it to be an exciting year!

Finally! Some Winter!

I am really going to regret this title in a month or so.
But for now, it is the middle of January and we finally had some snow stay down in the backyard. (And already I hear people complaining about the cold).
I'm really sorry for all the pictures being sideways - it's driving me CRAZY and 3 hours later I'm just posting!

But Katheryn loves the snow, so we went out in the backyard to run around and play.
First there was the production of making sure that everyone was warm enough.

And we might as well get Nick up and standing while we are at it!
Nick is gaining so much confidence on his feet now!

Katheryn was all ready and waiting for Nick and I to finish getting dressed for the cold. Katheryn is wearing a scarf that still has my name sewn into it from when I was a little girl!

And Nick wanted to make sure that we didn't forget to put his new boots on (they light up).

Then we were out!

Katheryn has a house in the backyard that they gravitate to. All Nick wanted to do was ring the doorbell and get inside. BUT we have stuff inside and I can't fit inside like I did in the fall.
So I'm holding onto Nick's arm or shoulder or something to try to get him to move around in the little house. I wasn't always successful and Nick had 2 spills  - luckily he just seemed to shrug it off. I don't have any pictures because I just don't have that many hands!

And Katheryn was serving some snow-hamburgers.

But the kids had alot of fun in the snow, and I got cold long before they were ready to go in!

A big purchase

We make a very exciting purchase for Nick this week!

I've decided that it is time to start to cath Nick on the potty.

This will hopefully transition into a routine that will get him out of diapers.

After the disastrous Tweed experience last month I thought it was time to get off the change table.

I'd tried him on the potty a couple of months ago, but Nick's balance was still off and I just couldn't maneuver everything and couldn't figure out the proper logistics. I did talk to OT in June about something to help, but what we were shown was not what I had in mind at all. The flamingo toilet system - it was big and bulky and a piece of equipment I didn't think we needed.

I'm still on the lookout for something very simple - but somehow I can't find it (a little kid toilet set with handles).

But while we are at home, Nick now has his very own potty!

Except that this picture is of him on Katheryn's potty - oops. Nick picked out the cars potty - complete with a revving engine noise!

We've been cathing him on it all this week - so far so good!

Physiotherapy woes and wonders

You know when you have a blog post just waiting to burst forward. You write the whole thing in your head and know exactly what you are going to say.
I had this post all ready.
All about our physiotherapy woes.
I am currently pissed off at our local children's centre. Just like I was pissed off last year and other times. Because I feel we are being pushed around and not getting the care that we need.
Why?
Because we are still waiting to be picked up (again) from Grandview
Becase we had 2 blocks of therapy last year.
2 blocks!!! In 1 year.
That is 2 blocks of 7 weeks, and another 3 sessions to adjust the walker - so 17 sessions of physio in 52 weeks!

And this is what we are supposed to use to see that Nickolas is reaching his potential and getting the care he needs.

This is actually our government therapy. We have used insurance (a whole $500 in insurance - which we reached pretty quickly) to top up Nick's physio. We actually had 4 different physiotherapists working with Nickolas and I this past year. Melissa - who we saw Feb-March (block 1); Colleen that we see privately starting in May, Megan who we started with in July-August (block 2) and worked with the walker with us through the fall until she went off on maternity leave, and Doreen, we saw in the fall privately and who is also a osteopath and physiotherapist.
If you are counting (which I am) we paid privately for another 13 sessions. On top of our conductive education (not traditional physiotherapy - but we get working) So that's another 20 sessions.

At the spina bifida clinic we have even more physiotherapists! We have Kim our original physiotherapist, who has been off for 6 months and came back in October, and another PT who we never did therapy with, but see at baby group and clinic. She was the one who said that Nick functions at a L3 level.

Sounds great for continuing care.
Especially for a child that does not warm up to therapy very well.
In fact, he usually screams his way through therapy sessions. I've blogged about it before.
A child who has so much potential, but doesn't want to show it until he is ready.

We have not been recreating the wheel at every session.
When we were all of a sudden dumped by PT in March I was floundering. We were not left with a plan, we didn't have goals, we didn't even have any dates about when we would get picked up again. Just sometime in May (it was really July). I didn't want that to happen again
We started private physio in May. Nick screamed and cried and carried on through the whole thing - but he worked. And we had a plan, we had goals and written objectives.

In July I had a goal. I had an objective. I wanted a walker. I didn't care what I had to do, or what Nick had to do to get us a walker. But I wanted one. So once we met with Megan in July we started working on getting him a walker.
And we had one to take home on one of our last physio sessions at the end of July. We have since gone back a couple of times just for different walker things. I took off all of the supports at the end of August because I felt he didn't need them. And in September we changed out this walker for another one I purchased, and then for another loaner in October.
OK we might have a little bit of walker overload.

I just feel that we are being tossed aside and getting sub-standard, nonconsistent, noncontinuous care. And I don't really know what to do about it.

Well Kim to the rescue!
At baby group this month Kim offered to pick us up again for a block!
I am so excited. Kim is great, she is super experienced with spina bifida and Nick does know her. He needs a little bit of a warming up period. I am so excited about this. Finally to have weekly physiotherapy again (after 6 months) instead of a week here and there, espeically because we are on a break from our conductive education.
So we start again on lucky Friday the 13th! And we'll be moving forward, with the right equipment and support!

Class Clown

Nick loves being silly and clowning around.

Whenever we ask him about colours, he says that every colour is blue.
He knows his colours, he doesn't think that every colour is blue. He just likes saying it.

Last week I asked him what colour something was. He says yellow, looks at me with this funny grin then says blue! Blue!

This picture doesn't adequately show the funny-devil grin, but it's the closest I have.

Today he was playing with Kyle on a farm animal mat.
What is this? Nick says dog, cat...
"Good Nick! point to the cow", he points.
"OK, what is this?"
He looks at Kyle, goofy grin.
Dog
"No Nick, it's not a dog, it's a cow."
Dog
Nick what is this? (pointing to the pig)
Dog
He thinks it hilarious!

He's been doing it with everything. Plate, no it's a bowl; plate! Plate!
Putting his socks on his head, or his knee or his hand.

Silliness, but it makes us all laugh.
I think this boy is definitely going to be the class clown.